Expectations of individuals with neurological conditions from rehabilitation: A mixed-method study of needs

Background Knowledge of the specific expectations of patients with neurological conditions (NCs) from rehabilitation helps in setting attainable goals. Such expectations may vary from situation to situation. There are no studies investigating rehabilitation expectations amongst individuals with NCs in Nigeria. Objectives The aim of our study was to explore the rehabilitation expectations of individuals with NCs. Method This convergent mixed-methods study comprised a cross-sectional survey of 105 individuals with NCs and two sessions of Focus Group Discussions (FGDS) amongst eight individuals with NCs. The modified Needs Assessment Questionnaire was used to assess rehabilitation needs as a proxy for rehabilitation expectations, whilst disability was assessed using the World Health Organization Disability Assessment Schedule 2.0. Quantitative data were summarised using descriptive statistics and analysed using inferential statistics at p < 0.05. Thematic analysis was conducted on the qualitative data. Results Sixty-one (58.1%) stroke survivors, 33 (31.4%) individuals with spinal cord injury (SCI) and 11 (10.5%) with traumatic brain injury (TBI) aged 46.48 ± 15.91 were surveyed. The need for social/recreational activity was the most expressed need (100%) amongst the participants. Mobility was reported as an important need constituting a barrier to enjoying life by 93 (88.6%) participants. Individuals with SCI expressed the greatest needs compared with the other two groups. Needs were significantly correlated with severity of disability (p < 0.05). Four overarching themes (physical health, financial, healthcare services/rehabilitation and emotional/social) representing major areas of needs emerged from the FGD data. Conclusion Individuals with NCs in Nigeria have specified expectations of rehabilitation. Disability was a major driver of these expectations, irrespective of NC subtype. Clinical implications Rehabilitation programmes for individuals with NCs should target expressed needs or expectations of each patient cohort and minimise disabilities associated with these conditions.


Introduction
Neurological conditions (NCs) are a frequent cause of morbidity and disability, which constitute about 12% of total deaths globally (WHO 2006). The potential impact of NCs ranges from physical, motor, sensory, cognitive and communication impairments to psychosocial ones (Mohamed 2014). The impact of NCs on the overall well-being of individuals can be challenging, particularly in low-to middle-income countries where rehabilitation services and assistive technology are limited (WHO & World Bank 2011). Rehabilitation plays a key role in the management of people with NCs. It also minimises disability and improves the quality of life of people with acute and chronic NCs (Macdonell & Dewey 2001). The goal of rehabilitation services is to achieve and maintain optimal functioning in the short and long term (Rauch et al. 2011). prioritising and determining goals and priorities in rehabilitation and in promoting independence in the community (Harris & Eng 2004). It helps in tailoring rehabilitation services to the expressed needs of the affected population (Rauch et al. 2011). Also, organising rehabilitation around patients' expressed needs encourages their involvement in rehabilitation, enhances confidence in clinicians and improves satisfaction with care (Kennedy, Smithson & Blakey 2012;Whalley Hammell 2007). However, rehabilitation needs of patients with NCs are rarely assessed (Lynch et al. 2015).
Although some authors have examined the needs of individuals with some specific NCs, most of the available studies have been conducted in high-income countries. DePaul, Moreland and Dehueck (2013) report needs and barriers related to motor control, walking, stairs, fatigue, prevention of falls and access to physiotherapy services amongst patients with stroke in Canada. Needs related to mobility, arm and hand rehabilitation, general exercise, fall prevention and access to physiotherapy were also reported in earlier studies, all involving stroke survivors (Moreland et al. 2009;Pierce, Gordon & Steiner 2004;Talbot et al. 2004;Vincent et al. 2007). Van Loo et al. (2010) reported unmet information and psychological needs in individuals with long-term spinal cord injury (SCI) in the Netherlands. Beauregard et al. (2012) also reported high unmet emotional, psychological and employment needs amongst community-living individuals with SCI in Quebec. Fuentes et al. (2018) found unmet mental health and educational needs amongst children with traumatic brain injury (TBI) in the United States, whilst Jourdan et al. (2018) reported a high level of unmet need for information amongst adults with TBI in Paris.
Considering the differential impact of socio-economic status and culture on the level of disabilities resulting from NCs, it is possible that the rehabilitation needs of people with NCs in Nigeria will differ from those of their counterparts from other countries. There is no readily available information on the rehabilitation needs of this group of patients in our environment.
There have also been reported variations in rehabilitation needs of people with disabilities based on the primary condition causing the disability (Krahn, Walker & Correa-De-Araujo 2015). There appears to be a dearth of studies comparing rehabilitation needs across NCs. Previous studies have used either survey instruments alone or qualitative studies alone in order to investigate different aspects of rehabilitation needs of individuals with NCs. A mixedmethod study assessed sexual education needs only amongst people with SCI (New et al. 2016). Using a mixed-methods design produced an extensive description of rehabilitation needs and expectations from the patients' viewpoint. Acknowledging the expressed rehabilitation needs of patients and incorporating the same into treatment plans not only increases trust and satisfaction with care (Lateef 2011) but could also guide the development and implementation of appropriate and pragmatic rehabilitation services to address such needs. Thus, the objectives of our study were to investigate the rehabilitation needs of adults with selected NCs (stroke, TBI and SCI) in Ibadan, Nigeria, and to investigate the relationship between needs and severity of disability.

Methods
Our convergent mixed-methods study included a crosssectional survey and Focus Group Discussions (FGDs) (Figure 1). Mixed-methods design is ideal for capturing patients' experiences and for an in-depth understanding of a phenomenon (Morgan 2007). It is, therefore, well suited for exploring patients' expectation of rehabilitation. The study is reported in line with the Good Reporting of A Mixed-Methods Study (GRAMMS) guideline (Appendix 1). Participants for the cross-sectional survey were adults with stroke (61), TBI (11) and SCI (33) attending the physiotherapy clinics of three government-owned hospitals in Ibadan, Nigeria. These three NCs (Stroke, TBI and SCI) were selected because they are sudden onset NCs with significant lifealtering impacts, and the main mode of management of these conditions is rehabilitation. Purposive and proportional sampling techniques were used to recruit participants for the survey. Adults diagnosed with more than one NC or those with other concomitant illnesses, which can influence or amplify their needs, were ineligible to participate in our study.
The population of patients with NCs receiving physiotherapy in the selected hospitals during the study period was determined from the available records at the hospitals as 142 (98 stroke survivors, 33 individuals with SCI and 11 individuals with TBI). The sample size for the study was determined using the formula (Yamane 1967)

The modified Needs Assessment Questionnaire
The NAQ was initially developed to assess rehabilitation needs of stroke survivors by Moreland et al. (2009)

World Health Organization Disability Assessment Schedule-2, 36-item version
The level of disability amongst participants was assessed using the World Health Organization Disability determining disability levels and profiles (Üstün et al. 2010

Procedure
Quantitative and qualitative data were collected concurrently.

Survey of expectations/needs of people with neurological condition
A detailed explanation of the procedure and relevance of the study was given to all eligible participants. They were informed that participation in the study was entirely voluntary. Participants who expressed interest were requested to sign/thumbprint the informed consent forms attached to the questionnaires. The mNAQ and WHODAS 2.0 used for the cross-sectional survey were intervieweradministered to all participants by one of the authors (DAZ) after consent was obtained. Survey data were collected from May to August 2017.

Exploration of expectations/needs of people with neurological conditions using focus group discussions
The needs of people with NCs were explored during FGDs. Two sessions of FGDs were held with eight patients with NCs (four stroke survivors, three patients with SCI and one patient with TBI). Participants were purposively selected from participants in the cross-sectional survey based on their ability to communicate freely and spontaneously in both English and Yoruba. All participants for the FGDs were recruited from the same healthcare facility to minimise expectations related to variation in healthcare service provision. A focus interview guide (Appendix 2) was developed based on a review of previous studies on rehabilitation needs of patients with stroke (DePaul et al. 2013;Moreland et al. 2009). The guide was reviewed by the same expert panel that evaluated the mNAQ. The FGDs were moderated by a senior lecturer with a PhD in cardiopulmonary physiotherapy who had experience in conducting qualitative studies. The moderator had no direct link with participants who were patients with NCs. Participants in the survey were invited to volunteer for participation in the FGDs by DAZ who was on a clinical posting in the tertiary hospital as a postgraduate student. FGDs were held twice, 1 week apart, in order to ensure data saturation. The time taken for each discussion session was about 60 min in length. Discussions were audio-taped, and field notes were also taken.

Data analysis
Quantitative data were cleaned and analysed using Statistical Package for the Social Sciences (SPSS) version 20.0. As questionnaires were interviewer-administered, there were no missing data. Descriptive statistics were used to summarise socio-demographic characteristics of participants and prevalence of rehabilitation needs derived from the mNAQ. A Spearman's rank correlation was used to examine the relationship between rehabilitation needs and each of age and disability. A Kruskal-Wallis test was used to find the differences in rehabilitation needs across the level of education and NCs. A Mann-Whitney U test was used to find difference in rehabilitation needs between male and female participants. The level of significance was set at 0.05.
Data from the qualitative study were transcribed verbatim by a professional transcriptionist. A deductive approach was employed for the thematic analysis of transcripts. An independent data analyst who is versed in qualitative data analysis performed the initial coding of the raw transcripts. Transcripts and coding were compared and validated by two of the authors (OAO and DAZ) independently using a constant comparative technique. Themes were identified based on the frequency of occurrence in transcripts and relevance to the objectives of our study. Four main themes indicating areas of perceived rehabilitation needs emerged from the thematic analysis data and were agreed upon by the research team.

Ethical consideration
Ethical approval was obtained from the appropriate Institutional Health Research Ethics Committee. Informed consents were obtained, and other data privacy procedures were duly followed. Socio-demographic information was elicited from participants and documented using a data capturing form. Participants were then requested to complete two patient-reported outcome measures -the modified Needs Assessment Questionnaire and the WHODAS 2.0. Ethical clearance number: UI/EC/17/0053.

Results
Quantitative and qualitative data were merged to produce a rich and more complete description of the expectations of patients with NCs from rehabilitation using a contiguous approach (Figure 1).  stroke survivors include social/recreational need (100.0%), support in the community (100.0%); rehabilitation/medical need (96.7%), feelings/memory/emotional need (96.7%) and service in community and home needs (95.1%). Individuals with SCI reported significantly highest needs in mobility (< 0.01), rehabilitation and medical (p = 0.04), social and recreational activity (p = 0.03), financial and government assistance (p < 0.01), and barriers to enjoying life domains (p < 0.01) across NCs (Table 3).

Results from the survey of expectations/needs of people with neurological conditions
Significant differences in rehabilitation and medical need (p = 0.04), feelings, memory and emotional needs (p = 0.01), and financial and government assistance needs (p = 0.03) were found between male and female participants, with females expressing more needs than males. Participants with secondary education expressed the most needs in mobility (p < 0.01), self-care (p < 0.01), communication (p = 0.02), service at home and community (p < 0.01), and support in the community domains across levels of education. Although a negative correlation was found between age and 10 out of the 12 domains of mNAQ, only two domains (rehabilitation and medical needs and barriers to enjoying life) significantly correlated with age (p = 0.01).
Participants with SCI reported significantly worst disability in the mobility and participation domains of the WHODAS 2.0. Cognitive disability was significantly worst in patients with TBI and the best amongst participants with SCI (Table 4). There were significant linear relationships amongst almost all the domains of the WHODAS 2.0 and the domains of the mNAQ (Table 5).

Expressed expectations/needs of people with neurological condition from rehabilitation
Four stroke survivors, three patients with SCI and one patient with TBI participated in the FGDs. Participants in the FGDs (5 males, 3 females) were aged 48.10 ± 12.18 years. All the participants agreed that they had needs that are not being specifically addressed by the healthcare system. Needs expressed during the FGDs were categorised into the following themes: physical health need, financial need, health services/rehabilitation need, and emotional and social support need.

Physical health need
The greatest need expressed by the participants was the need for restoration of mobility. Participants believed they could continue with some of their former activities and achieve their dreams and aspirations if they were able to move around as illustrated by the following quotes:

Financial need
All the participants reported that management of the disabilities resulting from NCs was financially challenging: 'Financial support is really a serious issue…' (P5, SCI, male) 'Financial need is general to everybody especially for those who are not mobile…' (P6, TBI, male) '… Because of poverty in the country. Right from day one, the doctor know that I am supposed to undergo MRI test but because of cost and non-availability of the test (as at that time due to industrial action), they could not inform me till they wasted three years of going to physiotherapy, raise leg, raise hand and doing unnecessary tests uncountable times including X-ray.' (P3, SCI, female) 'Yes, even though I need a wheel chair, I will need to restructure my house to aid movement with a wheel chair. I am going to need money to do that.' (P5, SCI, male) '…There are many things…like material needs in terms of appliances, that can assist my arm to be more functional.' (P1, SS, male) 'I will need like a motorized wheel chair, it will go a long way to move around without calling for assistance.' (P3, SCI, female) Some of the participants reported skipping scheduled physiotherapy appointments because of non-availability of funds: 'I pay between 1800-2000 naira every week for physiotherapy not to talk of consultant services etc... These costs are too much. It may discourage one from coming for physiotherapy.' (P6, TBI, male) A participant related the lack of finances to cater for healthcare services to inability to engage in paid employment because of the onset of NC: 'You know if one is working, to come to hospital you can easily get money to borrow…but as you are now….' (P7, SS, male)

Health services/rehabilitation needs
Participants decried lack of and/or inadequate manpower, especially of trained physiotherapists in healthcare facilities. They believed that there was a disproportion between available physiotherapists and the number of patients/ clients on clinic days, which may hinder optimum rehabilitation. This, they opined, constituted a barrier to their rehabilitation need being met.
Participants expressed severe dissatisfaction with physiotherapy services, such as not receiving adequate attention during clinic days, partly because of large number of patients and few attending physiotherapists. They complained about physiotherapists attending to multiple patients at the same time, resulting in sub-optimal therapy sessions. Some participants complained that their clinic appointments were reduced without information on reasons for the reduction. Also, patients claimed physiotherapists did not provide sufficient information on the management of NCs, partly because of consideration of financial capacity of participants. The inadequate provision of information was considered to be problematic: 'You see, when you come here, you can see that I am sweating. My singlet is soaked. The AC is not functioning. And for someone who cannot walk, the conveniences are closed. Some people can't hold their urine and before they go to the other far convenience they end up urinating on themselves.' (P4, SS, male) 'Access to physiotherapy services is very important because distance from such services may even be a barrier. So there's need to make physiotherapy services accessible and available to people who need it.' (P5, SCI, male) They also advocated for more physiotherapy clinics and rehabilitation centres: '…if we have more functional facilities with sophisticated equipment that can complement..., I believe the pressure will be lesser. If it can't be within each local government, I think it should be in each senatorial district.' (P1, SS, male) 'Probably the hospital is short staffed. When you put a patient on the mat, one PT is attending to 3-4 patients at a time. Raise your leg 10× I am coming. He is going to another person who may be lazy. He might have done it 3× but by the time the PT comes back, he will say he is done. Eventually the goal of treatment is not achieved.' (P7, SS, male) Participants advocated for home visits and follow up of patients with disabilities discharged from inpatient care. According to some participants, the social/welfare departments of the healthcare facilities should be proactive in this area. They believed that a monthly follow up of patients after hospital discharge might help in improving their health status.
'Well I have not seen my doctors (physicians) for over 7 months now…does it mean that the hospital has too much patients that they forget some of their patients. They never checked on me like call this girl or they have forgotten…if only is just to find out… how we are faring, what the situation is like…' (P3, SCI, female)

Emotional/social support needs
Participants expressed the need for more care, love and affection from their family, friends, colleagues and the society at large. According to the participants, a large proportion of the society tend to stigmatise and discriminate against them. Societal attitudes caused discouragement and depression, which participants claimed retards their rate of recovery. Participants expressed the need to dispel the myths surrounding NCs. According to the participants, these myths contributed to the negative societal attitudes towards people with NCs: In conclusion, participants suggested government involvement in sensitising and educating the public on the need to provide care and to show empathy towards persons with disabilities as a means of reducing discrimination.
Considering the importance of knowledge in handling some of the social needs of people with NCs, participants advocated for educating their family members, friends and the society about NCs: 'I think advocacy. At least concerned persons should advocate to the government concerning us with disability. The relationship is not good. At least people should show us love. They should know that no condition is ever permanent…we never prayed for it to be so…I just want people to relate more with us than discriminate.' (P3, SCI, female)

Discussion
All the individuals with NCs in our study reported unidentified or unmet rehabilitation needs. Their reported needs were in all domains of the mNAQ, which correspond with major areas of independent living. Social and recreational needs were experienced as the most challenging needs by the participants. This is similar to earlier reports amongst individuals with TBI and stroke survivors. Individuals with TBI have been reported to have higher unmet social/recreational needs compared with those without a disability (Brown, Gordon & Spielman 2003). Yi et al. (2015) also reported decreased participation in leisure activity after stroke. According to Mulligan et al. (2012), functional or physiological impairment can make accessing recreational facilities and equipment safely a challenge for persons with NCs. Meanwhile, it has been suggested that providing opportunities for individuals with NCs to participate safely in physical activities within the community could maintain or improve the health status and reduce the need for caregiver assistance (Salbach et al. 2014).
Rehabilitation and medical needs ranked next to social and recreational needs in our study's participants. Unmet service needs have been reported amongst stroke survivors (Chen et al. 2019). The need for information and more physiotherapy sessions was also highlighted by the participants. This is similar to reports from an earlier study, in which stroke survivors expressed more need for therapies, including physiotherapy (Brandriet, Lyons & Bentley 1994). The need for more physiotherapy sessions have similarly been reported amongst stroke survivors in Nigeria (Olaleye, Hamzat & Akinrinsade 2017). Physiotherapy is considered important for recovery of function amongst stroke survivors, and a decrease in therapy sessions, in terms of frequency and unit time/length, is opined to hinder recovery as expected (Wiles et al. 2002(Wiles et al. , 2004. Participants also expressed dissatisfaction with physiotherapy services received. The reason for dissatisfaction was mainly a perceived unjust reduction in therapy sessions. This is contrary to previous findings on satisfaction with physiotherapy services amongst Nigerians with chronic diseases (Odebiyi et al. 2009;Olaleye et al. 2017).
A key finding from the FGDs is that nearly all the participants wanted their mobility to be restored. Restoration of mobility was related to walking. This is similar to the report of Aspinal et al. (2014) where walking was regarded as a key indicator of physical health and functioning in people with long-term NCs. In earlier reports by Moreland et al (2009) and Depaul et al. (2013), needs and barriers related to motor control, walking, transfers, wheelchair use, balance and mobility skills were amongst the most expressed needs amongst stroke survivors. Rauch et al. (2011) similarly reported needs relating to participation, mobility, self-care and social integration as the most expressed needs by people with SCI. A mobility limitation is common amongst individuals with NCs (Mulligan et al. 2012). The findings from our study and the previous studies involving people with NCs suggest that mobility is a key priority in rehabilitation for individuals with NCs. Our findings could also be an indication that participants have limited understanding of the motor consequences of NCs or failed to accept that mobility impairments in NCs cannot necessarily be cured and may have to be managed or compensated for.
The accounts of the participants in the FGDs indicated a high need for emotional, social and government support. Participants recounted their experiences that border on maltreatment by friends and members of the community, which led to their isolation from communal and social life. Studies have reported a lack of social support amongst stroke survivors (Lynch et al. 2008;Urimubenshi & Rhoda 2011). Although the desired government support amongst our participants was mostly financial, there included a need for policies to support and protect the rights of people with disabilities within society. Overall, participants with SCI reported the greatest needs in seven domains of the mNAQ more than stroke survivors and individuals with TBI. Studies have reported a higher level of disability in individuals with SCI compared with other populations with disabilities (Aidinoff et al. 2011;Coura et al. 2012;Fernhall et al. 2008). This high level of disability amongst individuals with SCI may contribute to their greater needs.
Needs were negatively correlated with the age of the participants in all but home care, and services at home and community domains on the mNAQ. This suggests a decrease in rehabilitation needs with increasing age. This is similar to the findings of Olaiya et al. (2017) who reported fewer unmet needs with increasing age amongst stroke survivors. A finding of decreasing need with increasing age amongst patients with multiple sclerosis has also been reported (Ponzio et al. 2015). In our environment, people tend to accept morbidity as an inevitable part of aging, and this may account for the low level of needs amongst the elderly.
Female respondents reported higher needs in all domains and barriers to enjoying life compared with male respondents. This is contrary to the findings of Trezzini et al. (2019), where expressed needs were not associated with gender in individuals with SCI despite female participants in their study reporting higher unmet needs for recreation and peer support. Our findings could be a reflection of the demands and expectations placed on women in our environment. The pressure to return to paid employment amongst women who were breadwinners in their family could have caused anxiety and resulted in greater expressed needs.
Participants with secondary education had the greatest needs in all the domains on the mNAQ compared with those with primary education and tertiary education. This finding may be a reflection of the level of exposure of the participants to information. Participants with primary education may have limited information regarding their condition and the possible interventions that are available for amelioration. It could also be that participants with primary education did not express their needs for fear of their inability to pay for services required to meet them. Participants with tertiary education, on the other hand, may be able to take measures to minimise or prevent the negative impact of NCs based on the information available to them. Also, participants with tertiary education could be employed and have health insurance coverage, which could contribute to their needs being met as they arose.
There was a significant linear relationship between needs and severity of disability. This is similar to the findings from the studies of Depaul et al. (2013), Moreland et al. (2009) and Tistad et al. (2012) amongst stroke survivors. According to these authors, stroke survivors with a higher level of disability reported greater rehabilitation needs than those with a lower level of disability. Noreau et al. (2014) and Trezzini et al. (2019) similarly reported that individuals with more severe SCI were more likely to express more needs than those with less severe injury. This suggests that disability is an important driver of rehabilitation needs in people with NCs.
Using a mixed-methods design to investigate the rehabilitation needs of patients with NCs has provided an in-depth understanding of their needs and how and who they feel could meet these needs. Questions in the focus interview guide were derived from items on the mNAQ. Data collected from FGDs complemented the findings from the survey. There are, however, inherent limitations to our study. Participants in the survey were at different stages in their rehabilitation programme. There could be variation in needs based on the stage of rehabilitation, and this could affect the generalisability of findings to all phases of rehabilitation. Both components of our study were based on self-reports from participants, and there could be response bias.

Conclusion
Rehabilitation needs of individuals with NCs in Nigeria were correlated with severity of disability and differed across NCs. Individuals with SCI, especially those with more severe disability, had greater rehabilitation needs. Lack of mobility was considered a major barrier to enjoying life activities. Participants felt that the provision of transportation for people with disability by the government may minimise barriers to enjoying life. Needs expressed by patients should be considered when planning rehabilitation programmes for people with NCs. Further research on how the needs of patients influence utilisation of rehabilitation services is recommended.

Data dissemination
The findings from our study underscore the need for rehabilitation therapists to acknowledge and incorporate patients' needs and expectations in rehabilitation plans. To this end, our findings have been disseminated as platform presentations at the International Conference of Medical Rehabilitation Professionals held at the Lagos Airport Hotel, Lagos, Nigeria from 20 to 22 September, 2017, and at the fifth International Conference on Physiotherapy held in Dubai, UAE from 27 to 29 November, 2017.